Update on My app at TCI

[Sweetheartsluv]

Hi Guys,

I went for my app at The Chiari Institute last week my fiance and I drove up Thursday night and stayed at the Variety House. It was surprisingly clean and the other patient's were extremely welcoming. It was the first time I had met anyone with Chiari before so it was pretty overwhelming. I was very nervous for Fridays appointment with Dr. B but managed to finally relax a bit.

Friday morning came and first we met with June one of Dr. B's Np's she was VERY nice asked alot of questions and had me do so reflex tests that I was not aware I could do before still a bit confused about that part.. Then we went back to the waiting room for about a half hour. The June came back and brought us in to the exam room to meet with Dr. B he had already reviewed all of my scan, medical records, ect.. He explnd that yes I have Chiari Malformation 1 and surgery is medically necessary. He explnd that he wd perform a Posterior fossa decompression with duraplasty. Then he explnd he thinks I may also have Tethered Cord Syndrome.. He gave us alot of information my fiance absorb 90% of it and I think a good part went over my head.. It's all still pretty overwhelming but I'm happy I met a doctor that finally understands.

Krista

[Sweetheartsluv]

Thanks Pam it truly is a different experience. :)

Selma,

I'm not really sure if I actually have Elhers-Danlos or Tethered Cord? That was the part that was a bit confusing.. June was the one that had me doing the flexibility tests and I could do all but two of them and I asked what they were for and then she said to see if I have Elhers-Danlos. Dr. B did say that he suspects I have Tethered Cord. It's never been in any of my scans but I have had urinary issues and I do have degenerative disc disease in my back. He ordered a test for me to have done with a urologist that I guess will help confirm whether I have it or not. How was your Tethered Cord diagnosed? Did he operate on your Tethered Cord as well? How long is your scar? Did he make the long scar then the scar across the top?

Krista

[selmaS]

  So glad to hear u have a dx and a course of action.....I had my surgery at TCI and am happy that I did......

May I ask, do u have Ehlers-Danlos too? Just curious...as I also was dx with TC, but I was aware of that dx b4 I got to TCI as it was on an old report I had dug up and no one told me about it except the drs at TCI.

Keep us posted on what u decide to do next

  "selma"

[pamk5]

It does make a difference when you finally get to a specialist.  It seems amazing how much we go thru to get to a doctor that understands.  I am glad you finally had a positive experience.  Keep us posted with your decision.

Pam